I would like to start this topic so people can share their knowledge and experience about this autoimmune illness that, to my knowledge, has not been given its own identity by the medical community. There is a long list of autoimmune diseases, but there seems to be no unique identification of systemic inflammation where any given individual often has a host of affected bodily systems & organs.

Iíve personally dealt with a number of these illnesses going to various specialists, but only recently learned from an ENT doc of the commonness of a person with one inflammatory condition having others as well, thus the autoimmune connection. And it makes perfect sense that an autoimmune problem would show up in multiple areas, but after years of various issues I was astonished that no other doc made that connection for me.

Am I correct that this is not recognized as a unique condition? Does anyone have knowledge/experience with any causal factors and/or treatments for this underlying condition? Are there medicines that can moderate the immune system response? What medical specialty deals with this? Iíve seen a rheumatologist for some of these things and have never heard her suggest any autoimmune treatment; it has always been specific protocols for specifically identified illnesses. Iím interested in hearing your thoughts.

M.

__________________"The only thing that makes me depressed, Doc, is not getting any answers from you."

The Following User Says Thank You to Rich775 For This Useful Post:Rita27 (06-26-2012)

It would typically be a form of MCTD Mixed Connective Tissue Disease. Doctors have fairly recently begun distinguishing various subtypes of MCTD.

The particular sub-type I have is quite uncommon and is diagnosed with a genetic test. I have severe inflammation of tendons, ligiaments, muscles, cartliage, nerves, and just recently I have had some issues with my kidneys where the chronic inflammation is causing stones.

It used to be the case that MCTD was the wastebasket you were put into when it was obvious that there was an autoimmune process, but no clear idea of the specific disease. Doctors are now seeing that MCTD is its own entity with various subtypes.

Please feel free to reach out if you have any questions.

I hope this helps you.

__________________

T

The Following User Says Thank You to msnova74 For This Useful Post:Rich775 (06-27-2012)

If I may inquire, what are you seeing your rheumy for? In any event, systemic inflammation is often the first sign of an AI disease, but a high sed rate, one measurement of that, can be caused by any number of processes. Same thing goes for the CRP test. And it is true that having one AI disease raises the risk of having another, but that is a very small raise. A rheumatologist is generally the specialist who deals in autoimmune diseases such as rheumatiod arthritis, lupus, MCTD, UCTD, scleroderma and such. Other autoimmune diseases such as Hashimoto's thyroiditis and Grave's disease are treated by an endocrinologist or general practioner. As far as treatments go, there are drugs such as the DMARDS, like hydroxychloroquinine which are used in many of the classic AI diseases to control them which in turn lowers systemic inflammation. There are other biologics and chemo drugs as well used in the classic AI diseases such as RA and lupus. Each disease has it's own drugs which may work better than others while some diseases, such as Scleroderma have no approved drug treatment at all. I know scleroderma best, so I'll use that as my illustration. Some diseases such as Graft vs Host disease produce the same or similar symptoms to it, have a definite cause. Exposure to silica dust and polyvinyl chloride can induce a scleroderma like disease. An environmental trigger such as a virus exposure has been hypothesized as well as a genetic component to the development of scleroderma. Research has not yet produced any conclusive evidence of either so far, although there have been tantalizing hints. Scleroderma is a very old disease, predating modern environments like rheumatiod artritis is a very old disease. There are systemic forms of it that are recognized specifically for multi-organ symptoms, such as CREST. It involves the vascular system, the entire esophogeal-gastro-intestinal system, the skin, the kidneys, and often involves the eyes and genitourethral systems. It also can appear sine- which means without it's defining skin symptoms. There are no approved drugs for it. Often treatment consists of symptom alleviation, if possible (there is no drug that will reverse skin hardening as of now) and use of drugs such as hydroxychloroquinine, methotrexate, Cellcept, and the like. I take anywhere from 17 to 21 RX's a day and am managing pretty well, I think. Each AI disease has classic forms but each patient has their own unique set of symptoms. Their symptoms may aggressively appear or they may have a very slow progression involving years. I hope this helps along with msnova's response. If you have any further or more specific questions, please don't hesitate to ask.

The Following User Says Thank You to luca689 For This Useful Post:Rich775 (06-28-2012)

Thanks for both the previous responses. Some of your info and acronyms went over my head, but I think I got the gist of it. Itís interesting that an ENT doc brought the subject to my attention, but ENT issues donít seem to be commonly on the list of AI diseases.

Luca689, to answer your question, I was seeing the rheumatologist for CFIDS/FM. While Iíve had chronic fatigue for years now, no doc has ever offered that as a diagnosis, though she did diagnose fibromyalgia. she never asked or offered any info on the other conditions, though admittedly I wasnít complaining to her about them, and some were not present when I first saw her a few years ago.

Most of the issues I deal with are inflammatory/AI in nature, though as far as I know none of them are as serious as some of the more problematic AI diseases. I have CFIDS/FM (maybe or maybe not related), IBS, chronic sinusitis, psoriasis, some respiratory issues, chronic nerve pain (maybe or maybe not related), and a few other floating issues that may be related to inflammation. The only times over the past 10 years or so that I have felt well has been in conjunction with significant (40 mg or so) of prednisone. As a systemic anti-inflammatory prednisone relieves most of the issues as long as I am on it. Maintenance-level doses (5-10 mg) donít help.

Inflammation plays a major role in what I deal with, but I see no docs attempting to treat it as a systemic issueóonly on a condition-by-condition basis, which was my interest in starting this thread.

__________________"The only thing that makes me depressed, Doc, is not getting any answers from you."

I'm sorry that you are dealing with so many issues. Systemic inflammation as measured by the blood tests i mention is a symptom, not the disease condition itself. It can be caused by autoimmune diseases, heart disease, a cold, an allergy, etc. so treating the conditions treats the inflammation. Now if you are talking about the inflammation involved in, say, tendonitis, that is a different kind of inflammation. That kind of inflammation differentiates IBS from IBD, as you probably already know. One of the first things that a rheumatologist will check is your ANA status, titre and pattern. They usually will also do an RF test, along with testing of various other antibodies, to see if your labs can point to an autoimmune problem (also symptoms are are part of the diagnostic criteria) or if your problem is something else. Of the things that you mentioned above, your psoriasis is an autoimmune disease and can be inflammatory as well as develop into psoriatic arthritis. I do have to agree with you that a high dose of prednisone does indeed make me feel great, but that really is a side effect of the drug, rather than the healing it is causing, LOL, and long term steroid use, even at low doses can have major side effects, so that is why I'm on the DMARDS and Chemo drugs among others. The bottom line is that in order to treat systemic inflammation as measured by blood tests, you have to treat whatever is causing it, on a condition by condition basis. It wouldn't help a heart disease patient to be on a DMARD, nor would it help a lupus patient who had no Raynaud's and no heart problems to be on a beta blocker. But the appropriate treatment of both conditions will lower systemic inflammation. But if I'm in a flare, for example, I am prone to getting tendonitis in my wrists and ankles, which is an inflammatory condition and is obviously systemic. So in the end, Dr's check both labs and symptoms in order to diagnose and treat inflammatory conditions. I hope this helps further.

The Following User Says Thank You to luca689 For This Useful Post:Rich775 (06-28-2012)

Thanks for helping me understand. I'm still working through it in my mind and trying to understand the info I got from the ENT doc, who I respect as being more knowledgable than many of the docs I've seen. He's a respected MD in a respected teaching hospital. However, I may not be fully understanding what he told me.

My understanding from him is that he was looking at systemic inflammation as an underlying condition for which they didn't know the cause in many cases. They were not looking at it as a symptom. So, psoriasis is a symptom and systemic inflammation is the cause; IBS is a symptom and systemic inflammation is the cause; etc. Each unique condition has its treatments (as you stated), but the underlying condition is systemic inflammation, and there is no generally recognized treatment for that. At least that was my understanding of what he was saying. As with many things, there are multiple things that can affect it--lifestyle, diet, etc.--but no general cause that they have identified.

His message to me basically was that a person with chronic inflammation in one area will likely have it or develop it other areas. That made perfect sense to me because that fits my experience. But your info shows me that there is not only much that I don't know about the issue, but also much that my docs, primarily the rheumy and the pcp, haven't told me. I never even heard of ANA before. I've done a fair amount of research on some of my conditions, but not on AI issues specifically. My effort here is my first stab in that direction.

Where I think I disagree with you is the idea that individual conditions cause systemic inflammation, rather than vice-versa. Your statement, "The bottom line is that in order to treat systemic inflammation as measured by blood tests, you have to treat whatever is causing it, on a condition by condition basis.", doesn't make sense to me. To me it is that something causes systemic inflammation and various peoples' bodies react in multiple ways (i.e., the various diseases/illnesses).

I don't know what is true in this regard, but this is why I started the thread and I greatly appreciate your input and participation. I will certainly be pursuing further the ideas/info you have provided.

Thanks,
M.

__________________"The only thing that makes me depressed, Doc, is not getting any answers from you."

Since you have been going to this rheum Dr. for awhile, and still don't have a clear idea of what is wrong, have you considered getting a fresh look at your case by a different rheumatologist? I would check around and try to find one who is highly recommended by people you. Make a list of all your symptoms, all your previously diagnosed conditions and take a copy of your test results from any diagnostic tests you have had. If that is extensive, try to pick out any that have abnormal values on them, and those from the last 2-3 years. Sometimes a fresh eval from someone who doesn't know you gives a different perspective. Many rheum are reluctant to diagnose and "label" patients with diseases that may affect their ability to get insurance, employment, etc. Sometimes autoimmune diseases take years to fully manifest themselves enough to make a diagnosis. They are complex illnesses with genetic and enviornmental causes, often multifactoral. There is a lot of overlap between the different diseases in terms of symptoms as well. If you seek a second opinion, I would make your goal clear-that you want to know if you have AI disease, which one or ones, and what can be done to treat it besides Prednisone. I hope you get more answers.

The Following User Says Thank You to ladybud For This Useful Post:Rich775 (06-28-2012)

Thanks for the info, and good advice, I think. The rheumatologist I was seeing I went to for fatigue, and CFIDS/FM seems to be a specialty for her. But in her defense, I haven't seen her since many of these other AI/inflammatory issues have arisen. I haven't seen anyone yet for the broader inflammatory conditions. Nonetheless, I think that seeing another doc per your advice is a good idea. I haven't been able to determine her expertise beyond what I was seeing her for. And I have experienced that it is difficult to get some docs out of the box you put them in with your first ailment(s).

__________________"The only thing that makes me depressed, Doc, is not getting any answers from you."

I saw my pcp today for a 6 month follow-up to other general stuff. I mentioned the multiple inflammatory conditions, and asked about inflammation in general and asked whether she would want to refer me to another rheum. I needed some blood work anyway, so she ordered a couple of tests related to inflammation. One was a CRP. The other I think was ESR? or similar--lol some other 3-letter initial. She wanted to check that first before deciding the best next step, so I'll know those results on Monday. Thanks again for the informative feedback.

__________________"The only thing that makes me depressed, Doc, is not getting any answers from you."